Lawmakers told of plight of disabled

January 3, 2014

WHEELING - As West Virginia lawmakers head to Charleston next week to deal with such issues as deteriorating infrastructure and a projected budget shortfall, those who care for the state's intellectually and developmentally disabled want to make sure their clients don't get lost in the shuffle.

Caring for those with intellectual and developmental disabilities is a costly proposition, and the need for such care doesn't end when an individual reaches adulthood.

One local man spent $50,000 of his own money over the past year to care for his 65-year-old autistic brother, Russell Nesbitt Services Executive Director Brian Breyer told state Sens. Rocky Fitzsimmons, D-Wheeling, and Jack Yost, D-Wellsburg, during their Thursday visit to the organization's facility on Fulton Street in Wheeling.

The two heard concerns before departing for the start of the 2014 legislative session Wednesday.

Russell Nesbitt Services, established in 1958 as the Ohio County Council for Retarded Children, has focused on providing services for disabled adults since 1994. Their programs include day treatment, housing and in-home care. Brent Bush, president of the agency's board of directors, said 51,000 students receive individualized instruction in West Virginia's school system. Before long, he said, those students will be adults in need of housing and employment.

Such people are "a forgotten population" in society, Breyer added.

"When you're 18, you're presumed to be competent unless proven otherwise in court," Bush said. "We have folks who we presume to be competent, but who perhaps aren't, and we need to put more safeguards in place to protect them."

Bush said almost 17 percent of West Virginians are 65 or older, with that number even higher - about 20 percent - in many parts of the Northern Panhandle. An aging population, he said, translates to limited earning capacity.

"A lot of those folks have been primary caregivers for people with disabilities," Bush said, noting that puts a strain on agencies such as Russell Nesbitt.

With the financial burden of care so heavy, many West Virginia families must rely on Medicaid for help, through the state's Title XIX intellectual/developmental disability waiver program. But the state Bureau of Medical Services only opens up a limited number of "slots" for participation in the program, in which the federal government reimburses the state for 75 percent of its costs.

There are almost 5,000 people on West Virginia's waiting list for Title XIX waivers, according to Jane Ketcham, executive director of REM West Virginia, a service provider for the intellectually disabled. That list grows by about 50 per month, she said.